Chronic illness: the parts we don't talk about

Category Archives: parenting

Parenting is supposed to provide unconditional love: you for your children and from your children to you. And it does.

That’s a parenting truth.

Here’s another parenting truth: your kids won’t like you all the time.

They go through stages where they prefer daddy over mummy, and sometimes, mummy over daddy.

Then they hit puberty and don’t like either of you.

I can see you nodding, Can I get an Amen?

What people don’t talk about is how sometimes you, wonderful parent that you are, don’t like your kids.

So I’ll fess up here and tell you my truth:

Sometimes I don’t like my kids

In fact this last week I have seriously disliked my kids.

Is it because they don’t listen at bedtime and are messing about the whole time?

Is it because they are testing the limits on food requests? Taking advantage of their eating issues to just pick their favourite food?

Is it because I haven’t had enough me time to recharge my batteries?

Yes. Yes to all of them. But mostly it’s No.2

F does have quite major issues with food and it’s still really hard to have food available for her that she will actually eat. I’ve written about it many times and our patience and encouragement is working and she is eating more and more. Did I mention that she ate roasted butternut squash? Voluntarily. And she keeps asking for it. Isn’t that fantastic?

Yes!

Except for when it isn’t. Except for when she can’t face it anymore.

You see, with her condition, her electrolytes can go all over the place, she ends up feeling nauseous and then it becomes hard for her to eat. Her appetite disappears. Food smells and tastes funny to her.

So you never know when she is going to stop eating. Because of her condition.

And then she’s a kid. All kids do their utmost to create the most perfect life for themselves (go kids!).

They want to wear their favourite clothes all the time.

They only want to eat their favourite food.

They want to watch their favourite tv programs.

So, is the sudden difficulty with eating a result of her condition or has she decided she doesn’t fancy it anymore?

Well, I don’t know either. But my gut tells me that she has been playing me lately. Playing me. And I don’t like it.

I got frustrated. It showed. So I told her my suspicion. I asked her outright:

Are you only eating things that you absolutely love and fancy eating?

Yes, she replied.

Mo’fo’!

I’m going nuts trying to feed her. And S? She doesn’t have these issues but she’s a smart girl. She sees the pattern and copies it, uses it to her advantage.

So we had a talk about it. We have called a truce.

But here’s another truth:

The dislike is temporary. The love is permanent.

p.s. her growth has stagnated and her neph says she needs to gain weight. Hmm, I wonder how much this has got to do with my tension? Probably more than it should.

This story was also published on Youshare so follow the link and like it there please.

Last sunday we went to a creativity workshop and open day with the girls and they loved the freedom to get really creative with their painting … and not have me worrying about getting paint on the floor. (Remember Monica in Friends? yeah, sometimes I’m like that “I want to control the fun”, keep it tidy. Shaking my head in shame).

On her way back from washing her hands F ran into a wall (in a straight, empty, corridor. I mean, how is that even possible?).

Turns out she thought she had reached the studio, turned left, her shoe flew off and she kicked the concrete wall. Hard. With her big toe. (is it wrong that I had a moment of relief at this point? the fact that she meant to turn means a lot to me)

It’s not broken. We got it checked out in the way that parents of chronically sick kids do: 4 days later. Don’t judge. The last thing we want is another trip to hospital. We do enough of that already. And it’s the last thing our kids want too. But that’s another story.

She rested up for the whole afternoon. Noone could touch it or sit on the same sofa as her, just in case they touched her (not just her toe, we couldn’t come within 1m of her).

Bedtime: the obstacle of skinny jeans

“I’ll help you with your jeans. We’ll be careful when we take them off” I said, thinking that this was a good thing. Oh, how can I still keep on forgetting who I’m talking to?

She processed this and realised straight away that this might hurt. She started crying. Really hard. This lead to one of the most beautiful moments I’ve had with her; the two of us sitting in the bathroom, she on the toilet, me on a stool.

“It’s time to take off your trousers. While you’re sitting, I’ll pull them off” I said.

“No!” she cried. And cried. “I’m scared!”

I tried to calm her down:

“I haven’t done anything yet. Please calm down. You can cry if it hurts but please don’t cry because you think it’s going to hurt.

You don’t have to be afraid. Do you know that you can choose to be afraid or not?”

She said “Yes”. (So she does listen to what I say to her).

“Do you want to be afraid?” I asked. And this is when I saw her at her most beautiful: honest, open and accepting of herself

“Yes, I want to be afraid” she replied.

So I let her. I put my arms around her and let her be afraid.

She cried some more. Then she started talking, laughing.

She let me take the jeans off her uninjured foot. Then she let me take them off her other foot. There was a lot of pausing and checking in. She was still scared, but much less so.

It hurt a little.

I carried her to bed. She slept on her back the whole night, not turning like she normally does. She told me how she was able to do it: “I kept telling myself, don’t turn, don’t turn. And I didn’t”.

This experience taught me a couple of things:

Just how amazing she is. I know it, but now I see her even more deeply.

We don’t need to make our children happy all the time.

Sometimes we get so caught up in trying to make our kids happy that we forget that they want to feel other emotions too. She wanted to feel scared. When we honour their feelings and their choices, we honour them. We tell them that they matter.

For so long, F has consumed very little food by eating. Apart from the nausea, the extremely sensitive gag reflex and the throat spasm affecting her ability swallow, there has been another factor: her teeny tiny bites.

No matter how small a piece of food you give her, she will always find a way to pick a bit off and eat that. Crumbs. Her bites have been crumb size.

With increasing regularity she has been taking bigger bites, always showing us “look at the size of this!” and then putting it in her mouth.

In the last couple of months she has actually been putting enough food in her mouth in one go to fill her mouth; enough to puff out her cheeks even. It takes effort. Sometimes you can see that she is gagging and with the incredible control that she has, she stops herself from vomiting. She is proud of herself for setting a challenge and then making it. We cheer her on.

I never thought much about it (I only drive myself crazy trying to figure out how I can make her eat).

It’s part of her journey of learning to eat. It’s the hard way because it is conscious. She actually thinks about how to move food around her mouth, how to move it to the back so she can swallow. Next time you take a bite, pay attention. Do you even know how you use your mouth to eat? Well, unless you are a speech therapist, you probably don’t know. None of us do. We learn to eat before the age of two and we are not aware of what’s going on. Food goes in, we chew, we swallow. End of story.

For late eaters like F, who started eating much later than that, it’s a conscious process. They are aware about what’s going on when food goes in the mouth. Quite frankly, it’s quite a gross process.

So as parents, we encourage eating (I wrote about how we do that here and here) and allow her to set her own pace. If she wants to take teeny tiny bites, then ok. It will just take longer.

Then something happened and my heart paused, then beat again. Tears burned at the back of my eyes.

Just recently she told J why she does this. And this is what she said:

“I want to be able to eat like you guys do, you know, normally”.

We forget how much children are aware of. They don’t talk about how they feel different but they do feel it. They don’t say that they feel excluded, left out from something that everyone else can do (like eating). But they do feel it.

We should not take silence as “everything is ok”. If we listen carefully we can find out so much of what is going on in their lives.

for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.

Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.

it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.

F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).

She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.

So after 3.5 years building up to F allowing me to do it, we are back to square one.

Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).

Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.

Rock and a hard place.

(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.

Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.

Rock and a hard place.

The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).